Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Can You Help Me?
0

11 posts in this topic

Hi Everyone,

I'm a new poster, and I'm also writing from England! I was diagnosed as a celiac 7 years ago when I was living in the U.S. I manage a strict no wheat, no gluten, no oats, rye etc. diet.

Over the last month or so, I've been having some medical problems, and I (and my doctors) are struggling to figure out what is going on. I wanted to post in case anyone had any ideas or suggestions for when I go back and see my doctor on Thursday.

I have been having pain in my lower right abdomen. It is there all the time, but it changes in its intensity... right now it's a dull ache, but it can be like a knife digging into me, or feel like I've been bruised. I've also had sharp pain at times under my left breast, and there is a twisting feeling going on there, too. I have constant watery stools, and I haven't been able to eat anything really for the last two weeks, due to nausea and also some vomiting.

The doctors have eliminated anything to do with my gallbladder, kidneys, liver, spleen, lungs. So now they are focusing on stomach and intestines.

I'm just wondering if any of you might have suffered similar symptoms at all, or have any idea what this could be. I was supposed to fly to the States on Saturday for a 3 week vacation, but I think I'm going to have to cancel :-(

Any help at all would be greatly appreciated!

Stann2 :-)

0

Share this post


Link to post
Share on other sites


Ads by Google:

More than likely you've developed a new food intolerance. It is quite common with Celiacs.

I'd start keeping a food diary - what, when, where - key in on dairy, soy, corn - those seem to be the most common. Could also be a group of foods like salicylates, amines, lectins...

Or, you're inadvertently getting gluten or got glutened and are recovering.

Have you tried a "whole food" diet - nothing processed - just meat, veggies, fruits? If symptoms lessen with that its another hint that its a food intolerance of some sort - or you're consuming too much processed food for your level of gluten sensitivity (or sensitivity in general). It seems the longer we are gluten-free the more sensitive we get. And, gluten symptoms change over time.

0

Share this post


Link to post
Share on other sites

More than likely you've developed a new food intolerance. It is quite common with Celiacs.

I'd start keeping a food diary - what, when, where - key in on dairy, soy, corn - those seem to be the most common. Could also be a group of foods like salicylates, amines, lectins...

Or, you're inadvertently getting gluten or got glutened and are recovering.

Have you tried a "whole food" diet - nothing processed - just meat, veggies, fruits? If symptoms lessen with that its another hint that its a food intolerance of some sort - or you're consuming too much processed food for your level of gluten sensitivity (or sensitivity in general). It seems the longer we are gluten-free the more sensitive we get. And, gluten symptoms change over time.

Thanks so much for your response. Yes, the doctor actually had me on the FODMAP diet for about 2 weeks before the symptoms got worse... that pretty much eliminated everything except fresh fruits and veg. All I have eaten in the last 3 days is soup, but even that is proving to be problematic. I have noticed over the years that I have gotten more sensitive, but I am a stickler in what I eat. I write everything down and look for trends etc.

In 7 years, I have only ever gotten glutened twice, and both times were bad enough to warrant a hospital visit, so I'm not keen on that happening any time soon! I don't even know if these current symptoms are linked, but in my world when something goes on with the stomach and intestines, wheat/gluten is the first place I go to!

Thanks again for your suggestions :-)

0

Share this post


Link to post
Share on other sites

Okay, let's see what's in your soup and see if that provides any clues?? :) Any new supplements or meds or toiletries? New partner? Anything different?

1

Share this post


Link to post
Share on other sites

Have they done stool testing to rule out any nasty food borne illnesses like Salmonella? If not ask that be done ASAP. While that should have been one of the first things they did doctors sometimes don't. I had salmonella once and had symptoms similiar to yours. The doctor just kept saying my 'IBS' (wasn't diagnosed yet) was just acting up. It was 2 weeks before I could get them to test. I got an apology and a script for an antibiotic the next day.

I hope you figure out what is causing the problem soon.

0

Share this post


Link to post
Share on other sites




I agree that it sounds like an additional food intolerance. Soy does that to me. It's in all sorts of things.

Did the broth you used for your soup have MSG or autolyzed yeast extract? They can give me trouble too.

Sometimes we know to look to our food logs for certain foods, but seasonings, spices, and additives aren't as obvious.

I hope you can get this sorted out. A hydrogen breath test might be a good idea to check for SIBO?

0

Share this post


Link to post
Share on other sites

If you go through the salmonella, sibo testing and are clear I'd look at the more difficult things like food groups - sals, histamines, amines, lectins. They are tricky to figure out but can be super problematic. From what I've read by posters here they can be as bad or worse to deal with than gluten.

I have a few other food issues - preservatives, colors, msg - but for the most part are easy to identify and avoid. When you get into salicylates its hard because they are in almost all foods. And they are especially in HEALTHY foods (fruits, veggies). So you can eat tons of healthy stuff and get sicker and sicker. Same with the histamines, amines, lectins.

I certainly hope you get relief soon. Best of luck to you.

0

Share this post


Link to post
Share on other sites

Hi Everyone,

Thanks again for your replies.

Nothing has changed in my diet. The soup is plain butternut squash soup, made with water and a bit of salt and pepper. No new partner, no new shampoo or toothpaste.

They did do a stool sample and there was no bacteria or parasites. They did an ultrasound which came back fine, also.

I'm a bit concerned that this might be crohn's disease or ulcerative colitis... does anyone have any experience with either of these?

Thanks for your help!

stann2

0

Share this post


Link to post
Share on other sites

Hi Everyone,

Thanks again for your replies.

Nothing has changed in my diet. The soup is plain butternut squash soup, made with water and a bit of salt and pepper. No new partner, no new shampoo or toothpaste.

They did do a stool sample and there was no bacteria or parasites. They did an ultrasound which came back fine, also.

I'm a bit concerned that this might be crohn's disease or ulcerative colitis... does anyone have any experience with either of these?

Thanks for your help!

stann2

Your diet wouldn't have had to change for it to be a salicylate, amine/histamine, etc. reaction. It would be a new intolerance, so to speak.

And no, I don't have experience with Crohn's /UC.

They do advise a low residue diet for Crohns-perhaps try those foods?

0

Share this post


Link to post
Share on other sites

I've heard an appendix can give you trouble for quite a while before going critical. And my son had lots of nausea and vomiting before his ruptured. Surely they checked you for appendicitis, though! That's so basic.

0

Share this post


Link to post
Share on other sites

I've heard an appendix can give you trouble for quite a while before going critical. And my son had lots of nausea and vomiting before his ruptured. Surely they checked you for appendicitis, though! That's so basic.

Excellent. I thought that was in his checked list but I don't see it.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,655
    • Total Posts
      921,623
  • Topics

  • Posts

    • Below is copied & pasted from this thread:   My celiac doctor is Dr. Syed Jafri, in Webster, TX (just south of Houston -- basically the Clear Lake City area), saved my LIFE.  I would recommend him to the whole, entire world.  I was desperately ill, and am still struggling, and he's a wonderful, sweet man who listens and is very proactive in helping you solve whatever problems you're having.  I wish all doctors were like him.  I have to fight and struggle with too many doctors to just listen to me and what I live with, day in and day out.  He's not like that.  Good luck to you.     There are recommendations on this thread too:  
    • I never worried about cross contamination because i was originally told i was just intolerant. after going gluten free i felt so much better up until this last march. dairy and fructose have been giving me problems but both lactose and fructose test came back negative.  this is what my gi doctor emailed me today 
    • Any place you know of to find more info? Seems like I am still in so much pain/bloat, I am not even sure if I would pick the right 5 foods!
    • Don't freak out worrying about other maladies yet. You would be absolutely amazed at the things that can/will resolve on the gluten free diet. Some take longer than others -- neurological seem to take the longest for most people but really, I guarantee, there will be things you had no idea or expectation of resolving will. There were tons for me and then there were things I sort of "woke up one day" & said, "hey, that's gone and that & that & that". Other, larger things had taken my attention so I hadn't paid attention to the smaller things until...... On the other hand, not everything is related to celiac but I bet you wouldn't find a handful of celiacs who didn't say something very similar to what I said above. Yes, thyroid problems are common with celiac but I'll also tell you there are/have been people on here who were hypothyroid before dx but after being gluten-free for a while they actually went back to normal thyroid numbers. My husband is one (yes, we both are celiac - it happens). He was on synthroid for 20 years or more. Guess what? He's not on it anymore. We've had his thyroid panel done several times since about a year gluten-free & he is no longer hypothyroid. 
    • Yes please, that'd be awesome Having a fun time trying to reply on my phone due to broken screen but will be back on tomorrow after results of doctor appointment to get to the bottom of why they've given me seemingly wrong advice re: next steps. Yup I'll admit to pity, anger, frustration and outright fear, been through the mill of emotions in this first week that's for sure. One thing before I go for that; back when I was self-diagnosing I wanted a full thyroid panel (T3, T4 etc.) and also ESR & CRP checks for vasculitis and similar maladies. Now it seems from my reading they can often follow celiac so my worry level of those has gone up a notch, more blood tests ahoy it seems? Main reason for worrying about those is the nearly constant tight / tender head I have at the moment. Top and sides of scalp. Could be the stress tensing the shoulders and occipital muscles at back of head but after the celiac diagnosis being missed I'm fearful of anything else being missed. Did anyone else have this tight head feeling at the start? Feels like the skin is being pulled inwards, sometimes goes down for a few minutes here and there and gets worse when sitting I think. I see the term "brain fog" a lot but luckily don't seem to have too much of that at present, this is more a physical sensation.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,657
    • Most Online
      3,093

    Newest Member
    pablito
    Joined